Halfway Around the Bend

    We have entered week 5, (of a 10 week medication weaning) without many concerns.  The first week she had two days of her eyes dilating, abnormally, then her eyes stabilized.  She has had her eyes dilate this way on and off her whole life so we didn't think much of it.  We just watch her carefully during these times.  Day 2, (of week 2) she had a tummy virus with low grade fever and she faired very well, meaning no seizure activity.   Very excited about that as she was down 2mls of med, with a fever present  The biggest change is her ability to process her world at a different rate.  Although, we weren't aware of obvious or negative side-effects of her being on this medication, I have to note, (as she is coming off the higher dosage)... she is more alert and focused.  I didn't realize the med was causing these changes in her.  Being on the med, (these years and raising the dosage gradually) we haven't been able notice the subtle changes.  Kinda like putting a frog in warm water, then gradually raising the temp to a boil and the frog doesn't realize what is happening...just remains in the water until it's too late...(scary thought) but the best way to describe being on a seizure med.  Please don't think I'm against being on seizure meds, because I'm not.  Seizure meds are necessary.  Just trying to explain all the unknowns and process.  We, (as parents) are the frog, too!

  This week, Phia has been a little more clumsy and has fallen down as she catches herself from stopping suddenly or running. She becomes unable to process where she is in space.   This could be the WHS and her sensory or the meds or a combo of both.  Again we are watching her close and taking notes.  She has had sensory issues all her life and we've helped her to be "grounded" on earth.  Her wings are large...*SMILE*,  so this can be difficult.  I often look to  Stuart and shake my head at the possibilities that are before us.   We agree in silence, with only a smile shared between us.  During our adventures, living with WHS in Phia's life, we have learned to be thankful.  Thankful.... for it all.  We find ourselves smiling in silence often....... a gift between us and God. 

"The Lord is near.  Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God." 

  I must admit, living this out is NOT easy.  I've had to fight against anxiety.  It seizes me like a thick blanket, mostly at night.  I awaken to shear panic and I fear the worst.  As I gain composure to fight this giant, I find myself forgetting the Lord is near.  Anxiety wraps me up in myself. This is the test.....  will I remain trapped in my head and myself or will I trust and put my thoughts on Him. The fear has me gripped by physical ailments as well..... sweating, heart pounding so hard I hear it in my ears and the inability to move a muscle, sometimes vomiting.......the worst, physical ailment, of all!    So, when I most need to focus on Him, I'm mostly focused on the immediate fight against these symptoms finding a way to plant themselves deep into my thoughts, body and soul.    I face the shackles and I hate them.  The best defense is to be in Gods presence, communicating with Him. I remember, "He is near" and I pray, telling myself to get out of my head..........pray...... OUT LOUD.   The words are urgent and the cry is desperation and I pray a prayer so ugly and broken that I hope He doesn't mind.  I find He doesn't and then I fall limp and He is there holding me and His word is rising up over my fears and it speaks deeper, than any fear, into my being.  My thoughts and body are are being soothed by His love and fear loses it's grip. My prayer transforms into that of thanksgiving, I crawl back under the covers and find His peace and sleep.

 Jesus said, "Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength." 

 Halfway around the bend, we are fighting to remain thankful and finding His Love.  Still could use your prayers.